Hypersomnia Foundation

Dr. Kate Kaplan of Stanford joins HF’s Regional Conference

The Hypersomnia Foundation is pleased to announce that Dr. Kate Kaplan, a clinical psychologist and sleep researcher at Stanford University is joining the list of presenters at HF’s Regional Conference in Boston on June 4th.

Dr. Kaplan will review ways that therapy can help individuals with hypersomnia manage symptoms and lead active, full lives. Dr. Kaplan practices behavioral sleep medicine and works frequently with individuals who have hypersomnia.

Dr. Kaplan is on the clinical faculty in the Psychiatry Department at Stanford University. Dr. Kaplan received her B.A. and M.A. from Stanford University and completed a Ph.D. at the University of California Berkeley, where she focused on hypersomnia co-occurring with psychiatric disorders. Dr. Kaplan returned to Stanford for clinical and research fellowships with an emphasis on sleep and sleep disorders. She has published in areas related to hypersomolence, sleep inertia and sleep treatments.

Speakers already scheduled include Dr. Lynn Marie Trotti of Emory University and Georgia disability attorney Anjel Burgess. Dr. Trotti will provide a clinical update on the field of IH, and the CoRDS patient registry. Ms. Burgess will discuss how workers with IH should prepare to “Stay Ahead of IH” on the job. In addition, HF Board Member Celia King will moderate a discussion on managing IH at college featuring Dr. Mary King, Ed.D, and two college students, Olivia G. Robbins and Jessamine Griewahn-Okita.

The conference takes place in Boston on Sunday, June 4th in the Johnson Building of the Boston Public Library, Rabb Lecture Hall, from 12:30 – 4:30 p.m. Optional social event planned for Saturday June 3rd include a trolley tour of the city (tickets $25) and a casual “meet and greet” evening.

The conference is free, and can also be viewed via livestream.

For more information, and to register for the conference or the livestream: http://www.hypersomniafoundation.org/2017hfrc/

For tickets to the sight-seeing trolley tour on June 3rd: Get Tickets Now

Posted in: Conference, HF Press Release

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Let Sleep Researchers Know What’s Important to YOU

HF urges the entire hypersomnia community, including people with IH, people with narcolepsy, all supporters and healthcare professionals, to take a short survey prepared by Project Sleep in partnership with the University of Arizona “to capture perspectives of the narcolepsy and hypersomnia community.”

Julie Flygare of Project Sleep notes, “…we hope it will be useful to help illustrate to the sleep researchers what PATIENTS’ research priorities are and how they may differ from their preconceived notions of what’s important – and hopefully spark some new collaborations between patient leaders and organizations and researchers.”

After we posted the link on our HF Facebook page, followers weighed in on the survey, commenting that it takes only about ten minutes to complete. Note that the deadline for completing the survey is May 17th.

To read more, and to take the survey:

http://project-sleep.com/narcolepsy-research-survey/

Posted in: narcolepsy, Research

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Dear Abby Misses the Mark on IH

A “Dear Abby” advice column was recently forwarded to us by Noelle, a member of the hypersomnia community. In a letter to Abby, a mother in New Jersey asked what to do about her teenaged son’s complete inability to get himself up for school in the morning. She said he is a responsible boy in every other way, but she fears he won’t be able to get to class when he starts college this fall. Unfortunately, Abby’s advice reflects the widespread lack of awareness of sleep disorders. But we viewed it as a golden opportunity to educate “Abby,” the public, and we hope, the mother of that young man.

The Hypersomnia Foundation, working with Dr. David Rye of Emory University, co-wrote and submitted a reply which we hope will be published. We have not yet heard back from the writers of “Dear Abby,” but we’ve decided to share the story here, in hopes that you will share it, too. (We did manage to get our letter posted on the Abby Facebook page.) Below is a link to the original letter, followed by our response. (Warning: Many readers will find the original letter and the Abby reply upsetting. We certainly did.) Our thanks to Noelle for bringing this to our attention.

The original column:

http://www.pressdemocrat.com/lifestyle/6726470-181/dear-abby-mom-cant-get

Dear Abby: Mom can’t get teen to wake up on his own
JEANNE PHILLIPS
DEAR ABBY | March 11, 2017

Dear Abby: My son “Jake” is headed to college in the fall, and I want his last year at home to be memorable and happy. He’s a good student and has been admitted to the college of his choice. The problem is, he can’t wake himself up in the morning. He switches off the alarm and goes back to sleep. I must go up to his room several times to wake him because he won’t get up the first time.

Jake is otherwise independent. He does his own laundry and keeps his room spotless. I’m spending a large part of my savings on his tuition, and I’m worried that unless he can wake himself in the mornings, he won’t get to classes on time.

I have tried talking to him about putting the alarm on “snooze” instead of turning it off, but nothing works. My husband suggests we pour a glass of cold water on Jake’s face 10 minutes after the alarm goes off. Can you help us solve this problem?

— Up Already in New Jersey

Dear Up: Although you may think your husband’s suggestion is harsh and inappropriate, it’s time you stopped coddling your son. The two of you need to sit him down and tell him that college is expensive, that if you and your husband are willing to go through the financial hardship of paying for it, he must wake up by himself and if he cannot manage to do that, he will have to pay for his own education. Perhaps that will get across to him that you are serious.

Our reply to “Abby”:

March 22, 2017

Dear Abby,

As soon as we read your reply to “Up Already in New Jersey,” we were compelled to respond. A mother wrote to you about her teenaged son, a good student and responsible young man, concerned that his inability to awaken in the morning would prevent him coping with the demands of college. You scolded her for coddling him, and didn’t disagree with her husband’s suggestion that she consider throwing cold water in her son’s face.

Abby, difficulty waking up may be a signal of serious medical conditions (e.g., low thyroid hormone levels, iron deficiency with or without anemia, and others). It may also be a symptom of certain poorly recognized primary sleep disorders. While adolescents have a natural propensity towards being “night owls,” long and unrefreshing sleep can be an indication of a more serious neurological disorder such as idiopathic hypersomnia or narcolepsy. The inability to awaken to a standard alarm is, for instance, one of the hallmark symptoms of idiopathic hypersomnia. Affected individuals will often resort to ‘sonic-boom’ alarms and other extraordinary means to awaken. Other symptoms may include disorientation after awakening, grogginess, ‘brain fog’ and an inability to remain alert during the day. That concerned mother would be well advised to seek the opinion of a board certified sleep medicine physician.

In a society where feeling tired is increasingly expected, and accepted, people with sleep disorders are often mistaken as unmotivated or lazy. It is truly heartbreaking how many people with a sleep disorder suffer for years before getting a proper diagnosis. If this mom’s teen has a medical or (un)recognized sleep disorder, throwing cold water in his face will not help. New Jersey mom’s son will need his parents’ guidance to sort out how to best evaluate and manage a condition that might affect his schooling, his work, and his relationships. New Jersey mom may also want to view online – free of charge – a discussion panel led by two students who have successfully navigated college with their diagnoses of idiopathic hypersomnia. It’s scheduled as a live webcast on June 4th, as part of the Hypersomnia Foundation’s conference in Boston, MA – anyone can go to www.hypersomniafoundation.org to register.

Sincerely,

Diane Powell, LCSW
CEO / Board Chair
The Hypersomnia Foundation

David B. Rye M.D., Ph.D.
Professor of Neurology, Emory University School of Medicine
Chair, Scientific Advisory Board Hypersomnia Foundation

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HF Board Member featured as guest on Top Docs Radio!

Hypersomnia Foundation’s Catherine Page-Rye will be live on Top Docs Radio, Tuesday April 18 at noon EDT.

Cat aims to promote awareness and better understanding of idiopathic hypersomnia (IH) as a rarely diagnosed, often misunderstood, serious neurological sleep disorder. She will discuss various topics with the moderator including:

• Distinguishing between the terms idiopathic hypersomnia (IH) and hypersomnia
• Classifications of hypersomnia
• Symptoms of IH
• Diagnosis and treatments of IH
• Hypersomnia Foundation programs for awareness, education and research aligning with
their slogan “Let’s get #BeyondSleepy.”

Plan to tune in via the internet using the following link and on the top right click ”listen” (do not click “select a studio”):

http://topdocs.businessradiox.com/

The show will also be archived and accessible via the above link thereafter.

Posted in: Awareness, HF Press Release

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World Sleep Day: Battling the Symptoms of Idiopathic Hypersomnia

 

 

World Sleep Day, an annual event, is a call to action by delegates from around the world to raise awareness about the many burdens of sleep problems and their prevention and management. This year WSD falls on Friday, March 17, 2017, and the slogan is “Sleep Soundly, Nurture Life.”

While this slogan aligns with many sleep disorders that are modifiable and manageable with the help of a sleep specialist encouraging good health, exercise and proper diet, there is unfortunately a class of central disorders of hypersomnolence (CDH), including idiopathic hypersomnia (IH), that is especially complex and more difficult to diagnose and treat.

On this World Sleep Day 2017, the Hypersomnia Foundation is working to raise awareness about IH, a chronic and often debilitating neurologic disorder, by releasing a summary of a recent review article about CDH. This summary is intended to make current research about these disorders more accessible to the public, and it is part of an ongoing series of journal article summaries provided by the Hypersomnia Foundation to increase awareness of IH and the related CDH.

Read the Article Review Here!

In a society where feeling tired is the norm, it can be difficult to comprehend the devastating impact of a malady in part defined by excessive daytime sleepiness. For people with idiopathic hypersomnia, a full night’s slumber has no effect on easing the insatiable need to sleep. The associated severe sleep inertia and mental fogginess make it extremely difficult for people with IH to hold down jobs, remain in school, maintain marriages, and fully engage with their family and friends.

As one person with IH insightfully described it, “I am like a soldier on a daily mission; I fight to stay awake and alert, but I lose the battle and retreat to bed.” The Hypersomnia Foundation is working to help those with IH win more battles. Together, let’s get #beyondsleepy!

 

A Short Bio of the HF

The Hypersomnia Foundation, Inc. (HF), established in 2014 as a public nonprofit in the USA, received its IRS 501(c)3 determination letter that same year. As an all-volunteer organization, the HF uses 100% of donated funds to support its mission of improving the lives of people with idiopathic hypersomnia (IH) and related disorders by advocating on their behalf, providing support, educating the public and healthcare professionals, raising awareness, and funding research into effective treatments, better diagnostic tools, and, ultimately, cures for the debilitating conditions that comprise IH.

The reach of the HF is international, although the vast majority of our constituents are in the United States. Presently there is a serious unmet clinical need for people with hypersomnia (PWH). Not only are approved or even universally effective treatments not available, but lack of recognition that the symptoms of hypersomnia comprise a neurologic sleep disorder leads to a delay in diagnosis and years of needless suffering. As one prominent sleep researcher recently said, “People with hypersomnia are the most underserved population in the entire sleep community. They are veritable orphans, lacking even the most basic needs of recognition, let alone validated diagnostic tools and effective treatment.” The emotional, vocational and financial implications of the undiagnosed and untreated physical symptoms can have a disabling impact. The HF was established to address these issues.

HF core beliefs include the following:

• All PWH deserve full and proper diagnosis and treatment.
• Optimal diagnosis and treatment derive from better knowledge.
• All of the causes of hypersomnia can be discovered and properly treated.

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Article Review: Khan Z, Trotti LM. “Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia.”

 

HF FOUNDATION - OverlapArtboard 3

 

This article reviews three central disorders of hypersomnolence (CDH), which include narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia. The main symptom patients experience in all three of these disorders is excessive daytime sleepiness (EDS), which cannot be explained by other medical conditions or by not getting enough sleep.

Article: Khan Z, Trotti LM. “Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia.” Chest. 2015 Jul;148(1):262-73. doi: 10.1378/chest.14-1304.
Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4694150/pdf/chest_148_1_262.pdf
Note: Terms in italics are defined in the glossary below.

 

Symptoms (See Table)

Even though the names for narcolepsy type 1 and narcolepsy type 2 sound similar, they are now thought to be quite different disorders. Narcolepsy types 1 and 2, as well as idiopathic hypersomnia, show overlapping symptoms. Nearly all patients with narcolepsy type 1 experience cataplexy (the sudden loss of muscle tone in response to a strong emotion, often when hearing or saying something funny). These patients have difficulty with not only staying awake during the day but also with staying asleep during the night. It is also very common for patients with narcolepsy type 1 to experience sleep paralysis and hallucinations.

On the other hand, patients with narcolepsy type 2 do not experience cataplexy, but also have difficulty with daytime wakefulness. Just as in narcolepsy type 1, it is also common for patients with narcolepsy type 2 to experience sleep paralysis and hallucinations.

Patients with idiopathic hypersomnia have difficulty with daytime wakefulness, and they do not experience cataplexy.  Conversely, to narcolepsy type 1, patients with idiopathic hypersomnia do not have problems with staying asleep during the night and only sometimes experience sleep paralysis and hallucinations. They also commonly experience sleep drunkenness.

 

Prevalence and Pathophysiology (Contributing Factors)

The prevalence of narcolepsy type 1 is 0.025-0.05% of the world’s population, whereas the prevalence of idiopathic hypersomnia is not presently known. Both narcolepsy and idiopathic hypersomnia usually first occur when patients are in their teens to 30s.

Patients with narcolepsy type 1 have low levels of hypocretin (also called orexin). Hypocretin is a substance produced in the brain that is involved in regulating many processes, including sleep, feeding, stress response, and reward. These low hypocretin levels are probably due to both environmental exposure and inherited genetic factors. Getting an infection may also cause narcolepsy to develop. For example, narcolepsy became three times more common in China after an outbreak of the H1N1 flu virus.

Although several studies have investigated factors that may contribute to the development of narcolepsy type 2 and idiopathic hypersomnia, it is currently unknown whether environmental exposures or genetic factors contribute to these disorders.

 

Diagnosis

Three months of EDS symptoms are necessary for a diagnosis of all three central disorders of hypersomnolence. For narcolepsy type 1 to be diagnosed, the patient must show either or both of the following: (1) they must have cataplexy, fall asleep in an average of eight minutes or less during naps on a daytime sleep study (MSLT), and enter into rapid eye movement (REM) sleep for at least two out of five naps during this sleep study, and/or (2) have low hypocretin levels.

For narcolepsy type 2 to be diagnosed, patients must also fall asleep in an average of eight minutes or less and enter into rapid eye movement (REM) sleep for at least two out of five naps during the MSLT. They must also not have cataplexy, have normal (or unknown) hypocretin levels, and their symptoms must not be explained by any other causes.

For the diagnosis of idiopathic hypersomnia to be made, patients must not have cataplexy, must enter into REM sleep fewer than two out of five naps during the MSLT, and their symptoms must not be explained by any other causes. Additionally, they also must show either or both of the following: (1) they must fall asleep in an average of eight minutes or less during the MSLT, and/or (2) they must sleep at least 660 minutes (11 hours) per day (either in a 24 hours sleep study or in a week of at-home monitoring).

 

Treatment and Conclusions

The main goal of treating patients with all three central disorders of hypersomnolence (narcolepsy types 1 and 2 and idiopathic hypersomnia) is to relieve EDS. There are several medications approved by the US Food and Drug Administration (FDA) to treat narcolepsy. There are none, however, approved by the FDA to treat idiopathic hypersomnia, so the medications approved for narcolepsy are often used “off-label” to treat these patients.

One of these medications, modafinil, has been shown to help patients with idiopathic hypersomnia. Modafinil is unlikely to be abused, but it can cause several unpleasant side effects, like headaches and nausea. Other medications used to treat the central disorders of hypersomnolence include amphetamine stimulants, such as methylphenidate (Ritalin) and dextroamphetamine. These can also help decrease EDS, but they have associated cardiovascular and psychiatric side effects. Several other medications are also used to treat the central disorders of hypersomnolence (including sodium oxybate and antidepressants), and other new therapies are currently being developed.

Further studies are necessary to develop better diagnostic tests and treatment, especially for patients who do not respond well to medication. Additional research is also important to better understand the underlying causes of these disorders.

 

Glossary:

Excessive Daytime Sleepiness (EDS): ““The inability to stay awake and alert during major waking episodes of the day, resulting in periods of irrepressible need for sleep or unintended lapses into drowsiness or sleep.” (1)

Sleep drunkenness: “A prolonged state after awakening in which motor functions return before full awareness or there is partial return of both.” (1)

Rapid eye movement (REM) sleep: “One of the four stages of sleep. During REM sleep, the eyes move rapidly while closed and dreams occur (2).”

MSLT: The multiple sleep latency test (MSLT) measures how quickly you fall asleep in a quiet environment during the day. The MSLT typically consists of five scheduled naps, each nap opportunity lasting 20 minutes, separated by two-hour breaks. During each of the nap opportunities, you lie in bed in a darkened quiet room and try to go to sleep. The time that it takes you to fall asleep is called the sleep latency. You will be allowed to sleep for a maximum of 15 minutes during each opportunity (You will be awakened if you don’t wake up on your own). If you do not fall asleep within 20 minutes, the nap trial will end.

References:

American Academy of Sleep Medicine. International classification of sleep disorders: diagnostic and coding manual. 3rd ed. Westchester, IL: American Academy of Sleep Medicine; 2014.)

  1. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0023519/

 

 

 

 

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Rare Disease Day: Research Brings Hope – My CoRDS Experience

Research Brings Hope – My CoRDS Experience

On February 28, 2017, the Hypersomnia Foundation (HF) joins with all those participating in Rare Disease Day supporting the slogan, “Research Brings Hope to People Living with a Rare Disease.”

On Rare Disease Day, through social media and our SomnusNooze newsletter, the HF once again encourages the entire hypersomnia community, including anyone with a central disorder of hypersomnolence (idiopathic hypersomnia, narcolepsy type 1, narcolepsy type 2, and Kleine-Levin syndrome), to help us get #BeyondSleepy by registering and completing the CoRDS registries. This is also a perfect opportunity for those who have already completed the registry to consider reviewing and updating their information if needed.

“When the CoRDS Hypersomnia Foundation patient registry debuted last year, I was incredibly excited about the opportunity to personally contribute to primary hypersomnia research. As a person with Idiopathic Hypersomnia, my energy, especially my cognitive energy, is extremely limited. This can make tasks like filling out a registry database quite difficult. However, it’s exactly the severity of my symptoms and the lack of effective treatments for and knowledge about the primary hypersomnias that make this registry so necessary.

Thankfully, the registry is set up so that you can easily complete it in small pieces, taking breaks whenever you need. You can even skip questions and come back to them later (just make sure you note the question number). Check out more helpful tips and FAQ at http://www.hypersomniafoundation.org/registry/.

I strongly encourage every single person with Narcolepsy, KLS, and Idiopathic Hypersomnia to push through their brain fog/sleepiness/exhaustion and prioritize contributing to this critically important database. Together we can dramatically increase knowledge of and treatment options for these devastating illnesses.”

Michelle E.

CoRDS is a centralized international patient registry for all rare diseases and has partnered with the NIH’s GRDR (Global Rare Disease Registry) program: https://ncats.nih.gov/grdr/partners.

For researchers to make advances in understanding and treatment of hypersomnia disorders, they need data. By completing the registry questionnaire, you are making a very valuable contribution to this cause. Learn more about the registry and how to sign up here:
http://www.hypersomniafoundation.org/registry/

People who have completed the registry also have this to say about their experience:

“In preparation for completing the Hypersomnia registry survey with CoRDS, I gathered as many of my medical history documents as possible. I reviewed these documents thoroughly, so that I knew what information I had and where it could be found before beginning the survey. I found this to be incredibly helpful. The survey is a bit lengthy, so being organized and understanding my personal data beforehand allowed me to complete the questions without becoming overwhelmed. Participating in this registry is an easy and effective way for all of us to contribute valuable information for the advancement of research on Hypersomnia.”
Amy H.

“I signed up with CoRDS and did the hypersomnia registry because I knew it was important to get my information out there for the doctors and researchers who are working on finding a treatment for this horrible disease. It only took a few minutes to register, but the survey itself took quite a bit of concentration that is difficult for someone with IH. I filled it out in little bits and whenever I felt I had enough energy I would go back to fill out a few more questions. I hope that my info will help in some way. If it does, then the time and energy was worth it!”
Dustin H.

If you have any questions, difficulties, or concerns while completing the CoRDS registries, please feel free to contact them at cords@sanfordhealth.org or call 877-658-9192.

If you have completed the CoRDS registries and want to share your experiences and advice with others, you can send them to us at: http://www.hypersomniafoundation.org/understanding-hypersomnia/share-your-journey/.

Posted in: Awareness, CoRDS Registry, Research

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A Service Dog Can Do That?

Service Dogs – Different Types and What They Do

Many people are surprised to learn there are more than a dozen different specializations for service dogs. There are diabetic alert dogs, severe allergy alert dogs, visual assistance dogs, hearing dogs for the deaf, wheelchair assistance dogs, psychiatric service dogs, brace/mobility support dogs, medical alert dogs, seizure assistance dogs, and dogs for autism, PTSD and more.*

According to the Americans with Disabilities Act (ADA, 1990), a dog is considered a “service dog” if it has been “individually trained to do work or perform tasks for the benefit of a person with a disability.” A disability is a “mental or physical condition which substantially limits a major life activity.” Examples include the following:

  • Caring for one’s self
  • Performing manual tasks
  • Walking
  • Seeing
  • Hearing
  • Speaking
  • Breathing
  • Learning
  • Working

Other disabilities may not be visible:

  • Deafness
  • Epilepsy
  • Psychiatric conditions
  • Diabetes

To be considered a service dog, the dog must be trained to perform tasks directly related to the person’s disability. Some service dogs perform two or more functions for their disabled handler, such as a brace / mobility support dog and a seizure assistance dog. There isn’t a clear way to classify all types of service dogs, nor is classification particularly important under the ADA as long as the dog is a service dog. The dog’s type, function, title, or classification is usually left up to the dog’s handler. The following are some ways in which service dogs can assist their handlers.

Allergy Alert: The service dog can alert its handler to life-threatening allergens that may be in the area, especially tree nuts, gluten, or shellfish.

Autism Assistance: The service dog can help to calm or ground an individual who has autism via tactile or deep pressure stimulation. The dog may also assist in teaching life skills, maintaining boundaries, or finding a “runner.”

Mobility Support /Wheelchair Assistance: A brace/mobility support dog works to provide bracing or counterbalancing to a partner who has balance issues due to a disability. Many brace/mobility support dogs also retrieve, open/close doors, or do other tasks to assist in day-to- day life or in an emergency. Dogs may also assist their partner by retrieving dropped objects, opening doors, retrieving the phone, helping with transfers, or doing anything else their partner may need.

Diabetic Alert: These dogs can alert their handler to dangerous or potentially deadly blood sugar highs and lows. Many dogs are trained to call 911 on a special K-9 Alert phone if their partner cannot be roused.

Hearing Assistance: Hearing assistance dogs can alert their deaf handler to environmental sounds, including, but not limited to, alarms, doorbells, knocking, phones, cars, or their name.

Medical Alert: These dogs are trained to alert their handler to dangerous physiologic changes. such as spikes or drops in blood pressure, hormone levels or some other parameter or to recognized an identifiable symptom.

Psychiatric Service: Psychiatric service dogs assist their handler with a psychiatric disability such as anxiety, depression or PTSD via specific trained tasks.

Seizure Response: These dogs respond to their handler’s seizures via trained tasks. The dog may retrieve medication, utilize deep pressure stimulation to end a seizure early, fetch a nearby person to help or call 911.

Visual Assistance: Also know as guide dogs, these animals help their visually impaired or blind handler to navigate the world.

Kimberly Brenowitz is the Master Trainer with Animals Deserve Better, Inc., and Paws for Life in Marietta, GA. She can be reached at adb@animalsdeservebetter.com.


*Editor’s Note: Although the article above does not specifically address service animals and sleep disorders, professionally trained service animals have been reported to be able to assist people with IH, narcolepsy and related disorders. For example, a service animal may be trained to wake their owner in response to an alarm, or wake them if they are falling asleep in public. It’s possible a service animal may make sure that their owner gets to a safe place when they are overwhelmed with sleep, and helps with other tasks. Service animals can also offer comfort and calm anxiety. Of course, owning and caring for any animal is a major commitment and expense. Thorough research and careful thought on the advantages, challenges, costs and responsibilities of owning a service animal is essential.

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2017 #BeyondSleepy in Boston

Hypersomnia Foundation Regional Conference on June 4th

The Hypersomnia Foundation (HF) board is finalizing the program for its 2017 Boston Regional Conference. We will provide Eventbrite registration details in the near future via Facebook, Twitter and Somnusnooze.

Information below will help you begin making your travel plans to Boston. Read to the bottom for information on special hotel accommodations!


Conference Schedule (As always, social activities are optional):

Saturday – June 3

  • 2:00-4:00PM-Old Town Trolley Tour https://www.trolleytours.com/boston#home-section  
  • Survey responders voted the trolley tour #1 choice for our Saturday afternoon activity.  Sit back, relax and discover all that Boston has to offer by means of this sightseeing tour!  Group booking arrangements will be available through our Eventbrite once it is live, and we anticipate the per person rate will not exceed $36.00 (seating will be limited).
  • 7:30PM – Meet and Greet Game Night
  • Enjoy a casual meet and greet with light snacks and games hosted by the HF Board at the Residence Inn Boston Harbor on Tudor Wharf.This event is FREE but you will need to register once our Eventbrite is live.

Sunday-June 4

  • 1:00-4:30PM – HF Regional Conference at the historic Boston Public Library at Copley Square, 700 Boylston St., Boston, MA 02116
  • We have booked Rabb Lecture Hall in the newly renovated Johnson Building at the Boston Public Library for another fabulous regional conference featuring dynamic speakers.In this state-of-the-art facility, our outstanding speakers will cover research updates on idiopathic hypersomnia and related disorders. This year’s conference, however, will also focus on advocacy and empowerment to assist people with hypersomnia and their supporters navigate this world living with a chronic, rare disorder.

COST OF CONFERENCE ATTENDANCE – We understand Boston can be pricey. With this in mind, we have been hard at work negotiating the perfect location and space for our conference. The stars aligned and this year attendance to this event will be FREE!
Due to limited space you will need to register for the conference once the Eventbrite is live.

At this moment we are not 100% certain that Livestreaming the event will be possible, but are working diligently to identify sponsorship to help cover AV and Livestreaming costs. Watch for updates.

Hotel Accommodations – For Saturday night, June 3rd, The Residence Inn Boston Harbor on Tudor Wharf has offered a special group rate of $289.00 USD per night (plus tax) for a studio suite.   All rooms include complimentary breakfast and in-room high-speed internet access.  These discounted rooms are limited and we cannot stress enough to book early!

This Residence Inn has generously agreed to offer this same rate for a limited number of rooms for Friday (June 2) and Sunday (June 4) nights as well.

To make a reservation guests can either call 800-331-3131 to the central reservation team (be sure to mention the Hypersomnia Foundation room block) or book online through this link:

Book your group rate for Hypersomnia Foundation

With specific hotel questions please contact Dory Noll at the Residence Inn,
at 617-933-5313 and she will be happy to assist you.

Details about registration for the Saturday trolley tour and the meet and greet, as well as for Sunday’s Regional Conference will be highlighted in a future SomnusNooze once program details have been finalized.

We look forward to connecting with everyone in Boston!

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